We have sent our submission to NICE on their ‘Care of the dying adult: draft guideline consultation’ which closed today (9th September 2015).
We were highly critical of the Liverpool Care Pathway (LCP), and remain critical of any ‘pathway’ to death.
We are disappointed that on page 150 of the NICE draft guideline, it says: “Death is unlikely to be hastened by not having clinically assisted hydration”.
This is palpably untrue. If someone is unable to drink, not giving hydration will kill them.
We are also astonished that there is no mention of nutrition that we can see in the draft guideline.
We wish to remind NICE of the independent review on the LCP carried out by Baroness Neuberger and her highly critical report in 2012. It was particularly critical of the withdrawal of nutrition and hydration. Lady Neuberger said “the default course of action should be that patients be supported with hydration and nutrition unless there is a strong reason not to do so”.
That must be reflected in the NICE guidance if the public are to have any confidence in it.
In too many reported cases, elderly patients were sedated, starved and dehydrated to death under the LCP. Relatives reported being told in a matter-of-fact way that their relative was dying when they weren’t at all. You will be aware, or should be, of the personal testimony of Fiona Bruce MP about how her own father was treated. She was told he was dying, she moved him to a nursing home, and he recovered.
So we are also concerned that there is still a ‘pathway’ element to the NICE draft guidance. The whole idea of a ‘pathway’ leads one to question its destination.
The object of the exercise must not be to ‘free up beds’. Hospitals should be obliged under any NICE guidelines to give nutrition and hydration adequate for patients’ physiological needs at all times and regardless of prognosis.
There appears to be no structure in the draft guidance for a clinical decision on whether or not a patient is actually dying. Such a decision should be led by evidence, if there is no evidence, then the patient should be cared for as if recovery were expected.
We also believe the guidance should specify that a consultant doctor, not a nurse, should make every decision, in consultation with relatives, about treatment for vulnerable or elderly patients.
So finally, we question the very title of the draft guidance: ‘Care of the Dying Adult’. Is this a ‘dying adult’ or simply a ‘very ill adult’? Unless there is clear clinical evidence that someone is actually dying, such an expression should never be used. It risks making the outcome follow a hospital manager’s desire and is quite out of place in modern care.
We repeat that the public must have confidence in the medical profession. The LCP did much to destroy such trust. NICE has an opportunity to put matters right. It is an opportunity which we hope and pray is seized with enthusiasm.
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